I have mentioned this before, but - My MSAA Community

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I have mentioned this before, but

RoyceNewton profile image
10 Replies

I have mentioned this before but I will say it again. I suppose that is the thing with ms. Not much changes quickly and things need to be repeated as we have a tendency to forget things,

Okay, lets make this clear. I am not any type of medical professional or a representative of anybody except myself. Yes that is correct. NOBODY pays me for anything I say, and the information I share is from my and she who must be obeyed experience, a combined forty five years and five different Disease Modifying Therapies (DMT) So if “YOU” pardon me I sort of have a reasonable idea what I am talking about. I most certainly do not know everything or claim to. Just a little about a lot. I capitalize “YOU” because I feel that “YOU” are important and I hope that what I say helps “YOU” I do not need to know who “YOU” are, just that one thing I said helps “YOU” one day in some way. Oh I am Australian so sometimes my spelling is different, not wrong just different.

That being said I hope we are now much clearer. Clear as mud, but we all have ms so stop needing definitive clear answers. They do not exist and “YOU” will not find them. This is not that kind of disease, I wish it was but that would take all the fun out of it. It would take away all the mystery and uncertainty. Yes, “YOU” my friend are in for a life of uncertainty, maybe sone pain and sometimes disability, or not. Do not be scared, get used to it. It “IS” life with ms and is not bad it just “IS”. Neither good nor bad. Neither a curse or a blessing, it just “IS”. Strange attitude but believe me from experience it does make life easier and sense eventually.

I might recommend that “YOU” learn to stop asking why. A better question is, “okay, that is what happened, can I fix it? No, so what do i have to do to live with it?” Read it again, maybe one more time and let it sink in.

I am a big fan of crying, letting it out. I do not see tears as a weakness, more as a release valve. Somethings are better out than in, so feel free to cry when “YOU” want or need to. Twenty plus years on my ms journey and I still have some sadness and certainly tears. They never stop completely, get used to that.

I believe to survive ms, that education is a must. Get yourself a poster of the Central nervous system, and also the whole body. Study it, learn it. Make yourself an expert in your body. Know your nerves, where your pain comes from. Follow with your fingers the where things start and stop to give “YOU” the sensations that “YOU” feel. No need to know every name of everything but “YOU” at least “YOU”are less of a victim if “YOU” have some idea of what is happening and why. Do not be overwhelmed, this is a rather large disease so expect things to be big and “DO NOT” be scared. This is ms and without a doubt “YOU” can live well with it. “YOU” can do ms and be happy and live a full and happy life. This never needs to be the end of anything. Perhaps a new and exciting beginning, as always it is “YOUR CHOICE” Choose well and live a long and happy life with your ms. Being calm having a goal and a very flexible plan of action are your friends. Also this group is pretty cool as well :-)

Royce

With you on your journey

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RoyceNewton profile image
RoyceNewton
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10 Replies
Kenu profile image
Kenu

Great Post Royce 👍🙏😉. Ken 🐾🐾

RoyceNewton profile image
RoyceNewton in reply toKenu

Thanks mate

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Great idea about the poster Royce! I need to get one of those! 🤗💕🌠

RoyceNewton profile image
RoyceNewton in reply toJesmcd2

I thought I had mentioned it before sorry must have forgotten

falalalala profile image
falalalala

Less victim=more power :)

carolek572 profile image
carolek572CommunityAmbassador

If I knew what would happen next, it would not be fun, and it would be rather frightening! I know that it is coming, and like riding a rollercoaster, I can prepare, cinch the safety straps, hold on, scream, or not, and enjoy the ride! :-D

RoyceNewton profile image
RoyceNewton in reply tocarolek572

exactly the way to look at it, what might happen next

carolek572 profile image
carolek572CommunityAmbassador in reply toRoyceNewton

:-D

kycmary profile image
kycmary

Royce good advice as always ... I don't remember where but I did hear that one cannot ask why unless they first ask why not!!

RoyceNewton profile image
RoyceNewton in reply tokycmary

good point

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